Wells woman calls her liver transplant 'a total miracle'

WELLS, Maine — A hero saved Jodi DeMuth's life last week, ending her worst fears and reinvigorating her hope.

Jennifer Feals

WELLS, Maine — A hero saved Jodi DeMuth's life last week, ending her worst fears and reinvigorating her hope.

Her son, Mischa DeMuth Winters, who last week donated 60 percent of his liver to his mother, is that hero. And she's not the only one who sees it that way; her loving family, which extends beyond her three children, siblings and partner to a community of families the midwife has touched over 20 years, all agree.

"It is a miracle," DeMuth said, days after the transplant. "It's a total miracle."

It's been a long road for DeMuth, 58, of Wells, who was diagnosed 23 years ago with the degenerative autoimmune disease primary biliary cirrhosis, which irreversibly scarred her liver. The disease is chronic, progressive and has no cure.

Four months ago, DeMuth began the process of finding a donor, first turning to eight family members who were tested to determine whether they were a match. From that initial test emerged DeMuth Winters, 33, whom doctors determined was strong and healthy enough to handle the donation.

On May 8, the two went into surgery at Massachusetts General Hospital and DeMuth's scarred liver was replaced with 60 percent of her son's healthy organ. Now they are on the other side, looking forward to enjoying the gift of life this son gave to his mother.

'I don't feel any fear'

DeMuth went into the five-hour-plus surgery with the words of coach Eric Taylor on the television show "Friday Night Lights" ringing in her head: "Clear eyes, full heart, can't lose."

The effects of the disease had taken their toll on DeMuth physically and emotionally in recent months, including intense fatigue and color drawn from her face. But just 72 hours after transplant surgery, her complexion turned vibrant. The color in her eyes and cheeks was highlighted by a peach robe as she sat in a chair next to her hospital bed.

"I don't feel any fear," she said. "We did it; we're on the other side of it, and it went so much better than I could have ever dreamed it would go. It's just perfect. I feel a huge sense of relief and (am) just excited and happy and good — a post-operative sort of good."

According to her surgeon, James Markmann, chief of the Division of Transplantation at Massachusetts General Hospital, the surgery indeed could not have gone better.

"It really went smoothly. It was a beautiful piece of liver," he said.

As the recipient, DeMuth will heal faster than DeMuth Winters, with her new liver expected to regenerate to close-to-normal size in two to three weeks. DeMuth Winters is facing a six-week recovery, with his liver expected to grow back to its normal size in "a couple weeks," Markmann said.

While she's still in "one day at a time" mode, DeMuth said she's excited by the possibilities of what her future now holds. Doctors told her the new organ started working almost immediately and that just days after surgery results from the laboratory showed her liver-related functions had nearly normalized.

She said medical team members described her old liver as looking "like it really wanted to come out.

"It was scarred and lumpy, exactly what it was supposed to be," she said. "And Mischa's was pristine and fresh-cut. I've kept that visual, of that sort of growing inside me now."

'A tired hero'

Mischa DeMuth Winters said he hasn't yet fully comprehended the scope of what he's given, but his first thought upon seeing his mother spoke to his motivation.

"She looks happy," he said. "Hopefully, in a couple weeks, I'll feel like a hero. Right now, I just feel like a tired hero."

On Friday morning, three days after their surgery, DeMuth Winters was still on heavy pain medication, his recovery progressing slowly.

While Markmann said the liver is an extraordinary organ that can regenerate itself, a liver transplant is no simple feat and requires both the patients and medical teams to overcome a number of obstacles. There is always the risk of death.

But for mother and son, the prognosis is good; much as the surgery went without complications, Markmann said, he doesn't envision any complications with mother or son's recoveries.

"It really is an amazing gift to be able to help his mom like that. It's a life-saving gift," Markmann said. "Every time we are a part of these things, it's striking how generous the donor is. It's a heroic act to donate part of your liver. When in your life do you have an opportunity to save someone's life, and it's your mom?"

Support system

While mother and son have the surgery behind them, DeMuth said the journey to surgery was filled with highs and lows, and took a toll on her children and loved ones. Her two daughters, Caitlin DeMuth Winters and Alia Winters, have been constant sources of support, while friends and family made up a rolling list of who would be on-hand to assist DeMuth's partner, Earl Whitfield, and Mischa DeMuth Winters' wife, Katie.

"They have a mother and a brother. For Alia and Caitlin, it's a lot to go between. We're sort of in different places, too," DeMuth said, referring to the different roads to healing she and her son face.

Despite the life-or-death decision they faced, the family has filled the journey with lighthearted moments.

"You can just get her a card for Mother's Day," Mischa DeMuth Winters said, giving his sister, Caitlin, a thumbs up just before heading off to the operating room last week. "I'll handle the rest."

The girls are giving it right back to their brother, dishing flack for "having outdone them," DeMuth said.

"I feel really overwhelmed by how lucky I am to have them as my children," she said. "Man, did I score big. They are just all amazing in their own rights."

Blazing a path

Mischa DeMuth Winters is one of only a small percentage of people who are able to donate portions of their livers while still alive. But, with more than 114,000 people in the United States currently waiting for an organ transplant, there is overwhelming need.

"To be honest, there just simply aren't enough organs to save all those people," said Laura Dempsey, events and media relations coordinator for the New England Organ Bank. "They are relying on treatments and hoping that eventually they'll get the call, but for many of them, they won't get the call. Eighteen people die every day waiting for an organ transplant."

The No. 1 organ people on the transplant list need is the kidney, followed by the liver, Dempsey said. Last year in New England, there were 283 liver transplants, 32 of which were live-donor transplants. In the country last year, there were 63,000 liver transplants, 250 of which were live-donor procedures.

While a living person can donate a kidney with relatively few obstacles, the liver is different, as there are more complications and concerns. For example, in DeMuth's case, it was possible for a healthy family member with the same blood type to donate — but that is not the norm.

The best way to help, Dempsey said, is to register to be an organ donor by checking the box on your driver's license application or renewal form, or by visiting donatelifenewengland.com.

"It's so important for everyone who wants to be a donor to go ahead and register," she said. "Even though a person passed away, they have the opportunity to save lives and enhance other lives."

Giving thanks

While both DeMuth and her son will be monitored over the coming months for signs of organ rejection and other complications, and DeMuth will take immunosuppression medication for the rest of her life, none of that matters, they said, because they're over the biggest hurdle.

However, they still face the financial challenge of paying for the things insurance doesn't cover, a challenge the community is helping them face. Everyone from local residents to people across the country who have been touched by DeMuth and her work have rallied in a fund-raising effort through HelpHOPELive. The family's medical costs could grow to $1 million. With health insurance covering a portion of the bills, the community has participated in a variety of fund-raisers. "Jodi's Liver Team," a Facebook page, was created so that supporters could follow the process.

The family is at a point where that support will really start to make a difference, DeMuth said, as costs for prescriptions, insurance co-pays and more start to add up.

"Thank you is the biggest thing. All the support has meant so much to me," she said. "It's going to have a huge impact on our lives. To be relieved of that stress and worry is so huge. It's going to make life so much easier."

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